Posted 10/23/2018 9:56 PM (GMT 0)
Hi everyone,
So just had my latest followup with my LLMD. Here are some updates:
1. I'm on week 14 of treatment and have improved quite a bit although I'm still am homebound and am symptomatic 2-3 hours a day on my good days but they are less severe and manageable.
2. She still thinks my infections (bart/babs) are triggering MCAD and dysautonomia/pots which account for most of my symptoms so she is continuing to prescribe me new meds to trial to control my MCAD and pots. The latest rx she is prescribing me are cromolyn, singulair, and clonidine.
3. Since I keep having couple days where I am seeming to improve followed by 1 or 2 days of feeling worse as recent as 2 weeks ago.. she still thinks I am herxing on my current abx combo (biaxin/rifampin/malarone/artemissinin).. and it's a good sign of progress? She wants me to continue it for another week or two until my herx stabilizes and switch rifampin to rifabutin starting with once every 3 days, then 2 days a week after, then once a day a week after that. She's telling me I should herx a little more (ugh) after that and slowly start to get better.
There were some encouraging and discouraging parts of my followup. Some encouraging aspects were:
1. I feel like I am slowly getting better ... I've been documenting my symptoms on a log and chart my symptom duration and severity and trend it on a graph for me to visually see that I indeed am getting better (albeit slowly).
2. Doc says I am still herxing so means the abx is hitting something...which means my body is fighting and progress is being made.
Some discouraging/worrying aspects:
1. My stomach seems to be getting weaker...having some stomach issues every couple days. Not enough to say its c diff but concerned about that.
2. My total list of pills I take a day seems to be increasing with each followup appt... I'm looking forward to them gradually disappearing but it seems like she keeps adding something new to control pots or mcad or detox or something. So between my abx/probiotics/detox/hormone supplementation/vitamin supplementation/mcad blockers/pots meds I take about 45+ pills a day...Just hoping that I can maintain the associated cost...and wonder if I really need to take all these meds a day. (If anyone is interested to see my daily list, I'll send it to you just PM me)
3. At my initial appointment, my doc told me I should start feeling much better in about 4-6 months given that she believes we still caught me early on in my infection. However, now, after over 3 months in, she is saying it can take another 6 months given complications with babesia and such (initially thought I only had bart)...that really concerned me. =\
So, as of now, I am still on disability from work since Jan and still disabled. At my worst point around march, I was visiting the ER once a month and could barely walk around the house. Now, on my best days I can walk a mile, do pushups, chores around the house, and quick errands outside (to pick up rx or quick trips to the bank or haircut). I've even started to pick up some of my hobbies again such as playing my guitar and piano (although sometimes I pay a price afterward haha). The plan is to get back to work by January 2nd of 2018. I'm hoping that I would be recovered enough at that point to at least work part time as I'm not sure my job would be willing to extend my disability past that point...
Although I am making progress, anxieties creep up on me...particularly on my bad, symptomatic days and I feel like this will never be over. But I continue to remind myself of where I was 10 months ago compared to now and that I'm still quite early on in my treatment plan.
What I need to determine moving forward is when to say, "okay I think my herx has stabilized" and move on from the rifampin to the rifabutin. It is so dang hard to discern at what point my setback days is due to overexertion, weather, side effect from new medication, or my disease just flaring. At the moment, I'm just considering it all a herx since I don't typically get any new symptoms but just a returning of old ones that may have gone for awhile or worsening of current ones. I feel like though it's been quite a pattern for me to experience a setback every other week or so... when can I say it has stabilized??
Also, should I tell my doc I am done adding more things to my regimen? Like, when do you guys start taking things out that seemingly aren't making a difference? How can you tell if they aren't making a difference? I feel like I'm on quite a bit of MCAS drugs, vitamins, detox drugs/regimens, diet changes (gluten/dairy/sugar/processed free) that might not be making any difference?
okay I'll leave it at that, lots of information already, kind of just ranting at this point haha. Lemme know what you all think.